This blog site is a place for Anna Jaworski, author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation, and editor of The Heart of a Mother and The Heart of a Father, to keep readers updated on important news related to Baby Hearts Press and important information for the heart community. For more information about Baby Hearts Press, please visit us at http://www.babyheartspress.com.

Monday, August 12, 2013

Hospital Controversy

The heart world is up in arms due to controversy surrounding a hospital in Kentucky. No question about it, there's something amiss at the University of Kentucky Hospital. But what does this have to do with the heart world?

The University of Kentucky Hospital is not well known for its treatment of congenital heart defects but the issue of wrong doing -- especially the allegation that unnecessary heart procedures were conducted -- causes fear and concern in us all. Even if a heart child doesn't receive treatment at a particular facility, many of us have friends around the globe and the concern is that something of this magnitude could affect one of our friends.

But there is a bigger issue at hand here and that is a question I am frequently asked: Knowing what you know now, would you still take your child to a hospital which is not nationally rated for its treatment of congenital heart defects?

This issue is usually addressed most by parents who have found out in utero that their baby will be born with a severe congenital heart defect. Where should they go for treatment? Is there one "best" facility? What about family support? How long will they be away from home? What about follow-up treatment?

This is actually a HUGE issue! There are people who say that parents should only take their children to facilities like Boston Children's Hospital, Children's Hospital of Philadelphia or Mott Children's Hospital. Christus Santa Rosa or University Hospital (in San Antonio), where my son had his surgeries, are never on the lists for "best hospitals for congenital heart defect care." Knowing what I know now about the delicacy of the surgeries my son endured, would I still take my son to a lesser-known hospital?

Actions speak louder than words. My son had his first and second surgery at University Hospital in San Antonio with the brilliant surgeon John Calhoon, M.D. in 1994 and 1995, respectively. His third surgery came 16 years later, after many years of research, and that surgery was done by Dr. John Calhoon at Christus Santa Rosa Hospital in San Antonio (which is where the children's heart surgeries are now performed). Why didn't I take my son to Boston, Philly or Michigan?

"Continuity of care" was the expression we used on the insurance forms when we asked for my son's surgery to be performed by the same surgeon. He also had the same anesthesiologist he had had 16 years before. How many surgeons have some of the same members of their surgical team after 16 years of working together? What does that say about the care team? Who knew my son's heart better than the team that had worked on him 16 years prior?

Unfortunately, whenever there are controversies in the news, like the one in Kentucky, it is common for heart parents to second guess their decisions. Are they foolish for simply taking their child to the closest facility for care or to a facility that they believed would provide the best care even if they weren't nationally ranked? Should they be fighting for their child to go to the "best" facility? What facility is the best facility anyway?

Unlike parents whose children need tubes in their ears or some other kind of simple procedure, our children face life-and-death situations. There are so many issues we parents have to consider when we are trying to decide where to take our children for care. Sadly, one of the issues is: if our child doesn't make it through this procedure, are we close enough to family for them to be able to get to the hospital to say 'good-bye'? It seems melodramatic, but it's not. Unfortunately, this is an issue far too many friends of mine have had to face. It's not just about where our children receive care; finding the "right" hospital means finding a place where the parents can receive support as well. What happens to the family if the unthinkable occurs? How will being far away from family and friends complicate an already seemingly impossible situation?

My hope is that the problems associated with the University of Kentucky Hospital are all administration-based problems and not actually problems with the surgeons themselves. My hope is that the care any of my friends' children may have received at any facility was appropriate and that no child or family suffered needlessly.

Heart families need to have confidence in the hospitals they take their children to for care. Hospitals need to make sure that they are truly serving their communities and that they follow the Hippocratic Oath: Do No Harm.

4 comments:

I think that when parents make the decision to take their child to a certain hospital, the most imporant thing is that they have confidence and feel comfortable with their decision. I also think that all factors need to be taken into consideration. When Victoria was diagnosed our doctor told us TCH was the best place to go, so we went even though it was not the closest children's hospital to us - ig was actually 350 miles away. It was hard being away from family and friends but we knew we were in the right place for her. Thirty years later, she still goes to Texas Children's. They have provided all of her interventional care and I am glad we chose them.

Parents need the most accurate and up to date information and data on the hospitals and surgeons and medical teams that operate on and give post operative care to children born with CHD's. I will regret entrusting my son's health care and surgical treatment for Hypoplastic Left Heart Syndrome to the Hospital and Physicians that we were referred to by the Cardiologist that diagnosed Michael in utero. We were told glowing things about the surgeon and hospital's treatment of HLHS and other CHD's. Only After my son Michael died 6 weeks post-op from his 3rd stage open heart surgery did we start finding out about the number of children's deaths and the many blunders made pre, post, and even during surgery. I feel partially responsible for my beautiful boys death at 20 months old because even though we did try to educate ourselves and make the best choices for Michael I feel we failed him miserably. Parents need to know that post operative care is as important as the surgery itself and the institution you entrust your child's care needs to have an excellent record in long term results as well as in surgical results. I'm sorry if this seems repetitive but it cannot be said enough....educate yourself on all aspects of the cardiological care your child will receive at the medical institution you are considering entrusting your child to and on the statistics on mortality rates and post-op complications. I truly believe my son Michael would be here today doing well a happy 16 1/2 year old boy. Instead we just recently marked the 15th anniversary of his death.

Edie, I know you loved Michael and did the very best you could for him. We all know that hindsight is 20/20. Sadly, too many of our heart warriors die too young. You did nothing wrong. Sixteen and a half years ago, we didn't have the means to find out about statistics for surgeons and hospitals -- and even if we did, what could we do? So few hospitals were treating our children with HLHS.

My son's surgeon shared with me that he had not had that many successes. He suggested I just take Alex home to love him for what little time he had left. Had I listened to this doctor, instead of giving Alex a chance for life, I wouldn't have a 19 year old son alive today.

Your choices were limited. Who can tell which of our warriors will make it and which ones won't? There was one thing we knew for certain: without surgical intervention, our children would surely have died. You had 20 months with Michael -- which is longer than you would have had if you hadn't allowed the doctors the chance to operate on him. I am so very sorry for your loss but I know many heart friends who would have loved 20 months with their babies. *sigh* It's so wrong that so many of our children die so young.

You did nothing wrong, Edie. You loved, you trusted and you believed. You were and are a good mom. Michael lives on through you and through the fact that you share stories about him. Thank you for sharing your story on this blog.

Like you, I had to travel quite a distance for care. We drove over 3 hours from Mound, Texas to San Antonio for Alex's care, and like you, I'm glad we did.

Edie is right -- hospitals need to share their information with parents/patients so they feel confident they have made the best decision possible. There is nothing worse than feeling responsible for the death of a loved one because of a hospital's negligence. Regret is a horrible companion. You're right, too, Rita, that parents need to feel comfortable and confident in the hospital to which they entrust the care of their precious children. What do we hold more dear than our children? Hospitals have a responsibility to ensure that all parents feel they have done the best job they could in providing care for their children with broken hearts.